Parenting and Disability: 10 Things I’ve Thought About This Week

In true form, it has been a while since my last post as an inconsistent-mom-blogger, but I have suddenly found myself with more time to write as I am off on a bit of a leave from work and school. The good news is, I am not bored because I have a lot to reflect on, especially as a parent left trying to make sure their kid has what they need to be safe for next school year.

I usually try to err on the side of support vs. advice giving, but I’ve had so much floating around my head these days that I have 10 considerations that due to my current circumstances, I have come to recognize as worthy personal considerations worth sharing with other parents of kids with disabilities:

1. If you feel like giving up, surround yourself with a tribe of people who ‘get it’ and that you can vent to.

2. It is more work to raise a child with a disability because of how the world does not understand or plan for disability, this is not your child’s fault.

3. Take on the ‘big system fight’ when you can but don’t feel guilt if all you can do is fight for your own child.

4. You do have allies within these systems, but sometimes you have to look really hard to find them. They could be a lunch program supervisor, an educational assistant, a School Trustee, teacher, superintendent, etc…

5. Remember that your child is a precious human being, just like those without disabilities, don’t let all that talk about what your child can’t do or does inappropriately keep you from seeing them as precious.

6. People will always have advice for your, if you feel it’s unwelcome, judge people more by their intentions and less by the quality of their advice. It might be good to keep your distance from those with ill intentions. You don’t have to make everyone happy, but those with ill intentions can cause undue suffering if you give them too much room in your life.

7. Take care of yourself. Burn out is a real thing. Your health is important. If you are not around to love your child and help the world understand your child has a place in it, that would be a huge loss for everyone.

8. Celebrate what your child with a disability brings to your life, and let others hear about it. So often when working with professionals involved in our children’s lives, we forget they are not a problem to be dealt with. Their value is not based on report cards or how many IEP goals they attain in a year, don’t let anyone forget it ❤️.

9. You will fail at being everything your child needs. This includes what educators, child care providers, health care practitioners, mental health providers and other practitioners might request of you. You are not super human and at the end of the day, you may not be able to do it all. It is better to change one’s expectations than to die trying to meet the unrealistic gold standard.

10. Cry when you need to. Life can be hard enough without kids! Take a moment and let out what is causing you suffering somehow (maybe not crying if you are not a cryer) find someone to talk to if you need to. There is no shame in getting external help. Just make sure it’s the right kind of help for you.

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3 responses

I loved everything about this post as it was so timely and well written. I believe the same as you, especially finding a tribe who gets it. I love how you said judge people more on their good intentions than their advice. I’ve spent a few years in the judgement zone now I tend to my own backyard and let my garden flourish than having to always pull out negative weeds in others. 😊

It’s so true a journey I never thought I would be on as a parent. Now I don’t even know what my life would be like without all the lessons I’ve learned from my kids and ones I’m still learning. Much love and respect to you. ❤️